TRIPLE POSITIVE GROUP
Comments
-
I asked the onc about the neuropathy with my daughter and were told that up to 300mg of B6 was helpful. Others of the threads said L-glutamine worked for them. she was also told her vitamin d level was low and to take 1,000 IU per day and if that didn't bring it up, then to take 2,000 a day. Doc said chemo does damage to your bones.
Also on the taxanes - cold mitts and socks on the nails helps save them and reduces problems.
We are also getting rid of all soy (even in the gel part of gel capsules) due to her ER+ status and making other diet changes like multigrains that reduce estrogens. Seems like soy products and phytoestrogens are every where.
0 -
mother - I have been taking L-glutamine and B6 since round 1 and it may have helped to limit my symptoms.0
-
I was SO close to heading to a facility that did prone radiation. I found one in CA and one in FL. After the consults I learned that this while usually done in large breasted women, was best used on very localized tumors within the breast. I also wanted to do hyperthermia in conjunction. Duke has some awesome studies going on with this. Some private centers do it, but it doesn't seem to all be refined yet.
0 -
her2intn I like Omaz did 6 tx of TCH (taxotere/carboplatin) every 3 weeks. Finished the chemo part 4.5 week ago. I did start to get some neuropathy in my left heel, tingling in my left hand and soreness on the pads of me feet but would get better before the next treatment. I did start taking Acetyl L Carnitine 500 mg and only got in my left heel. My last 2 rounds the numbness in my left heel didn't go away. I still have it but I'm sure in time will go away. My onc watched me. If my nueropathy was worse than this she would have reduced my dose.
tx is prophalactic for microinvasion? Really? In my case the cancer did seemed to not spread because I had no node or LVI involvement but certain factors like HER2+ (and in my case large tumor with high grade) can mean there might be cells else where. They really don't know.That's why for your stage it makes sense to have this treatment.
I would also get a 2nd opinion on rads vs mastectomy. There was a very small about of LCIS (precancer) in my "good" breast found by the MRI. My BS recommended a BMX… prior to that he discouraged the BMX feelilng no need to remove healthy tissue. Just a thought but I don't know much about DCIS.
--------------------------------------------
Teal3Pink1 you are now getting a double dose?! does that mean you go every 6 weeks instead of every 3 weeks?
0 -
I too am worried about rads, but they say after surgery thats the next step...will cross that bridge after surgery. I know they have come a very long way and have very sophisticated equipment. My tumor is so close to the chest wall I worry about my heart. Also if I have a MX with recon, how much is gonna be left to radiate? I know they need to target any cells left over but I dont get how they will locate where or if there are any and where to aim the beams?? I will leave it to the scientist and pray for the best. Had last chemo today HORAAY! now on to surgery. Have taken leave from job finally to rest and prepare for next step...feels good to have time for myself.
0 -
carberry - CONGRATULATIONS on last chemo!! My tumor was also close to the chest wall. When the surgeon removed my tumor (lumpectomy) he put in 'clips' that my rad onc could see when she did the CT scan when they set me up for rads. The clips define the 'tumor bed' and tells them where to point the 'boosts'. First I had whole breast treatment, then boosts to the tumor bed. Since my tumor was 'deep' I couldn't do the more common electron boosts (single field) but did photon boosts which had 3 fields for me (angles of treatment). If lymph nodes are involved it is a little different. I think it is very important to have an excellent rad onc so that your treatment plan is optimized. For the whole breast radiation they used tangent fields which skim around the ribs and lungs. They can show you the plans. They try to include as little non-breast tissue as possible.
0 -
omaz- WOW thanks for all the info. I gues when your in the throes of things you really become an expert and have all the lingo down!! HA HA we are all gonna be pros with this stuff. Just tried filling out my disability papers- wish I was a pro on that, glad I still have some of my brain left...now on to the fun FAFSA forms for my sons college AAAHHH I need a secretary
0 -
carberry - Sorry if I got carried away!! I was pretty excited to finally figure out all the lingo. I picked up this and that by talking with the techs, the nurses and my onc. The tech showed me my boost plan on the computer because I was asking so many questions and my rad onc showed me my plan for the whole breast. I could clearly see the tumor bed and then the tech told me about the little clips. There are also curvy lines that show how the radiation is shaped around the chest. It's pretty cool. I also learned a whole bunch from the Jan 2010 radiation group, those ladies know a lot. When you get to rads if you go that way join or start a group of your own. It's nice to go through it with other women and be able to talk about the nitty gritty things like a sore nipple, which is what I have right now! TMI I know!!!0
-
omaz and carberry Since i had 3 pos lymph nodes the RO told me he will also radiate the axilla and the lymph nodes that are further up near my collar bone. That's one reason he wants the extra fluid aspirated so the lymphies can get their full dose. I'm up for anything that is part of cancer/search and destroy. libraylil0
-
Any of you gals that are getting Rads and have had nodes removed make sure you go to someone to measure your arms for LE baseline. I wish I did. If you get LE it's hard for them to know the true size of your arms. They can only compare one side to the other. If you are retaining fluid there will be no way for them to really know.
0 -
libraylil and lago. you make good points about making sure the fluid is out of the way and getting good measurements, we deffinitely want to get the rads going where they are supposed to. I guess when I have the mx and the actual tumors are gone, itsall those lymph nodes and surrounding skin I have to worry about to make sure everything is gone! I am also liking the recon surgery threads ...so much information and testimonials to help me with decisions and good questions to ask my surgeons. God bless everyone here during the stage you are at as every day is a new challenge.
0 -
Do you think an Onc would lower a dose of Taxotere and not tell me?
I've gotten bloody noses (progressively worse each time) the first 3 treatments...and now I'm not having it with the 4th. (Of course by putting it out there, I'll probably start gushing today). And I don't know if it is the sunshine or mental, but I feel really good...and have since a few days after the 4th treatment.
It's kinda scaring me. Makes me wonder if its working as hard as it should be.
0 -
TonLee my bloody nose was the worst the 1st tx. My 3rd tx seemed so much easier than 1 & 2 that I thought I was getting a reduction. It didn't even seem as bad after tx 6! So no I don't think you got less. Why wouldn't s/he tell you. I think it just means your platelets are doing better this round.
BTW I don't have bloody noses anymore. I have had the herceptin only infusion… but no bloody nose followed. Yay! Also my hair is really coming in although much slower on the top. My husband checked it out this morning. I think he's more excited about it than I am.
0 -
I agree with Lago...they don't mess with dosages unless there are serious issues. I think they would have told you. My nose dripped occasional blood off and on throughout. My platelets and white cells crashed around tx4, but I insisted on maintaining dosage. It took several months for blood work to normalize for me...but I am rock solid now. I finished treatment March of last year...wow, didn't even realize I am one year post chemo, woohoo!!
0 -
Oh, on the hair topic....I wore the penguin cold caps, and hair I did lose is now about 6 inches long. I went out last weekend and curled all of it and everyone commented on my cute new "layered" haircut, lol.
0 -
Lago,Omaz, Carberry and everyone: What great info! I'm definitely going to ask to see the rads plans. Sounds so interesting! I have a little bit of LE in my left arm and left breast from the SNB so I will also ask if that little bit of fluid will be in the way.0
-
TonLee: I think the med onc would discuss any changes to your protocol with you. I had a dosage lowered to 75% of protocol back in 2006. My gyn med onc was very clear why it was being lowered and what side effect we expected to be improved and what the next step would be if things didn't improve with the lowered dose. I was very nervous about getting less chemo and felt like Oliver Twist: Please sir, can I have more....! I really begged to get a full dose. It was embarrassing!
Side effects with each infusion can be different every step of the way. Sometimes our bodies adjust and we tolerate things better. And sometimes things build up over time and side effects could get more difficult. As someone in group used to say: Your mileage may vary depending on conditions beyond your control.
0 -
TonLee - I understand how you feel. Except for a few days of nausea plus the constant runny nose and some fatigue, I have been feeling fine since my 2nd TCH two weeks ago. Now I noticed some of my hair is starting to grow back and I actually find myself worrying that maybe the chemo isn't working properly. I know I'm being silly and I should enjoy the break from SEs, because who knows how the next treatment will go.
0 -
Teal3Pink1 chemo is based on surface area ( body weight and height) but sometimes they don't get it right... it isn't a perfect formula. This is why some people get SE that are too strong. They reduce to adjust. I'm sure you will do just fine with 75% dose.
Seriously folks I was asking the same thing after my 3rd tx. It seemed to be the easiest for me... then came tx 4, I new I was getting my usual dosage.
Ironically after tx 3 I had just finished watching that episode of American Greed on the pharmacist Robert Courtney (diluted chemo drugs to make more profit). I too thought something was very wrong at first.
0 -
Lago,That's good to know. I dreaded #4 because in a very unscientific survey, a lot of women said for some reason it was the worst. I think I feel better now than I have the entire time. (Except today, my son's 8th B-Day and I ate three pieces of cake with the butter cream frosting..chemo hasn't made me puke but that cake? It's trying to make a comeback!) But for the last 5 days I'm back to a two hour workout a day!! WOO HOO!
I hope you'll continue to keep us updated on how the Herceptin only is going. I'm anxious to hear.
WOO HOO Geewhiz! That's great! A year out. I was sure when diagnosed I wouldn't see a year out. I don't want to jink it, but my hair is coming in too. The more protein I eat, the more it grows. But it's only half way up to my first knuckle on the pinky finger though, so nothing to get too excited about. It's so weird. The blond hair on my arms never fell out. And I think the hair in my armpits is trying to grow in...NOOOO!!
Teal, that is a good motto to remember....kinda of like the fastest part of a commercial on the radio.... , the part where they talk 100 times faster than normal...lol
0 -
Tonlee Thursday had my 2nd solo herceptin "happy hour". I remembered to drink lots of water before,during, and after. A slight cough for a day or so. So far no SE's, except the lovely smell of Herceptin about my body for maybe one day after. Funny, I felt nauseous during, but I think it was the smell and taste of Herceptin, the saline flush taste, and the general medicinal smells in the chemo room. Flashbacks to TCH.
Doesn't it feel great Tonlee to know you are over 1/2 way!! Counting down.
libraylil
0 -
Libra....yes it is great knowing I only have two more to go...but I've learned from people here that even though #6 is done, there is still the same roller coaster ride for a week or so after....I sometimes get so focused on March 22nd, that I forget about the after effects...including that last Neulasta shot....only two more of those suckers. I can't WAIT until my body can start defending itself again...though I hope it's learned a lesson and takes defense a little more serious in the future.
Herceptin is stinky, and for whatever reason, last dose it gave me lots of gas (which was new). P-U!! lol
0 -
I didn't notice anything with my 1st Herceptin only infusion. #2 is March 1st so we'll see. I didn't even get the nose bleeds this time! Gas, I was so gassy on chemo so all I can tell is major improvement in that area.
0 -
So weird how it is different for each of us.
This last round made me so gassy...well, let's just say one afternoon I thought my boys were outside. I didn't even attempt to, um, you know....be quiet .... my 8 year old came running into the room laughing, fairly impressed I was able to make such a huge sound....and my 15 year old rolled his eyes and asked me if I needed to change my underwear! Then there was the obligatory holding the nose, gagging, falling on the floor playing dead....
We laughed off and on all day......until their dad came home and they told him...then they laughed and I blamed the cat.
0 -
tonlee I am so impressed by your workouts! way to go. I remember tx 1 & 2 was peice of cake..thought they were giving me water. then tx #3 my hair fell out I got very sick bld counts dropped with bld infusion needed I was a mess then #4 was worse so I made them drop the Taxotere dose or I wasnt gonna come back for more. They dropped it by 30% and I did better SE wise. But I still got so weak couldnt get up the stairs to shower... I still think it had more to do with my bld counts being so low ea time. had #6 this past Fri. and hoping for a calm non-SE week as the last hoorah and my hair is already starting to grow back I swear I look every day and count ea new peice of fuzz
0 -
Lol Carberry...I am down to counting eyelashes now....I know they're leaving soon, I have a big gap on the left eye....so I know exactly what you mean....
My hair is half way up to my first knuckle on the pinky finger, sticks straight up, and my nose hair is back...the more protein I eat, the more hair I grow....but I'm not counting hairs right now because as far as I know, it could all fall out again....and my hair has ALWAYS grown slow....
Congrats on being done. Here's to NO SIDE EFFECTS, or very minimal!
0 -
At my daughter's recent herceptin one week after TCH chemo, blood work was WBC at 3,100 and neutrophils at 850. I know the neutrs are divided by the WBC to get a percentage -hers was 27%. How low does it get before they start giving Neulasta?
0 -
I was given neulasta after every treatment. Some places wait till your counts get low. I'm not sure what level they decide to start giving it.
0 -
I also received neulasta after every TCH tx usually 24 to 48 hrs after the tx. My cts sill dropped once in awhile and the ONC would just wait and re-check the following week and they would usually start to rise on their own, more slowly though the more treatments I received.
0 -
My onc only does the neulasta shots when you become seriously neutropenic. My WBC hit below 2000, and I got the shot. I got it a second time when my platelets hit 15,000.
0
